Phoebe was getting tired, but I then had to make a quick stop by the house once more to get my notebook, which I had jotted down a few questions to ask Dr. B because there are always minor things I wonder about but forget to bring up in the moment. Phoebe talked me into giving her a snack and we were on the road by 9:15. Traffic was still moving slow. Our appointment was at 11, and with parking and getting checked in at security, I was still walking into the Bass Center at 11:05.
As I was leaving I saw a sign that said IMMUNE COMPROMISED AND BASS CENTER PATIENTS USE VALET SERVICE. Which is us, so maybe next time I will use the valet?!
Similar to last time, we had a bit of a wait before getting moved to a room. It was after 11:30 for sure. We spent the time doing some arts and crafts with some women who were there as volunteers. I think their t-shirts said something about Childhood Cancer and art. They had rubber stamps and also magazine pictures of animals to collage with. Phoebe enjoyed it.
We had our own room this time. The privacy is definitely a plus! Phoebe wanted to watch Elmo in Grouch Land immediately. Our nurse was really nice, she had a two year old and we had a lot of conversations about kids and how they speak Italian at home. I was able to handle the Tylenol on my own, but she had to help me get Phoebe to drink the Benedryl. We managed to not have her spit any out.
Our nurse deferred to a more senior one to help place the IV. It happened pretty fast, I didn't quite know it was about to happen. Child life never came by at all, though that's supposed to be part of Phoebe's file. I didn't have the ipad set up, so I just quickly pulled up some home videos on my phone of us looking at colorful fish and jelly fish at aquarium. I don't think I even had Phoebe's paci or other distractions, so Phoebe cried pretty hard. But the nurse was very confident and got it on the first try, so yay!
The nurses all wanted to know why Phoebe was doing such a long infusion, as opposed to the one hour one. We got asked that last time as well. I said I could ask Dr. B when she came by later. One nurse actually wrote the question on Phoebe's white board, and then as soon as Dr. B arrived they pounced on her with the question as well--- they were really eager to ask her.
So I guess they are used to administering a more rapid infusion, though that is mainly for GI patients-- Chrons, IBS. But I guess if you have proven to handle Remicade, you can have it done at a faster drip speed. Some patients may have an "infusion reaction" where it makes them start to feel poorly for getting it so quickly, others may have issues with their veins from trying to do it that way. But, even though you can still develop belated allergic reactions to Remicade, I guess this doesn't necessarily increase the likelihood of becoming resistant to it. Anyway, I said I didn't really have an opinion on it, but would defer to their medical opinions. Dr. B was not opposed to the suggestion, so re-ordered the infusion for that day to be done in 2 hours and said we can possibly try a 1 hour one next time. So if we go that route, that could be a big game changer. I've sent Dr. B a follow up email to get a little bit more information about it.
I did ask about what the options for closer infusions would be. I sounds like we could go to John Muir, though the downside would be it would be in an infusion center with lots of beds, not individual rooms. It would be run by children's oncology, so the oncologist would have to examine Phoebe and they would also have to get approval to also administer methotrexate there, Dr. B wouldn't be able to visit us, etc. We discussed a couple other options about changing our scheduling for staying at Stanford and working around traffic. Dr. B asked if Phoebe'd been to the hospital playgrounds yet, which we hadn't.
Dr. B examined Phoebe and the good news is, she still has no active arthritis. I said I'm thinking about signing Phoebe up for some sort of gymnastics class, since she loves to climb and swing, and she said that was fine.
I asked if she saw many siblings with JIA/other autoimmune or rheumatological conditions. I think she said it's about 25% of cases, there can be other conditions within the same family. I said that Cordelia has asked about getting arthritis, and so far I have been telling her she won't get it because it's not contagious. But Cordelia does seem like she has what I would describe as "floppy" joints. I am not qualified to diagnosis her with hyper-mobility, but that girl is very much a noodle to me. I know that some JIA kids have hyper-mobility, but Dr. B said that hyper-mobility on its own was not a red flag, and it fact was not regarded as a problem unless there was pain associated with it. So that was really good to hear, because I wasn't sure how they were all interconnected.
Along with trying to avoid getting too inevitably sick, I asked if Winter weather was a trigger for flares, and she said that there is a correlation in symptoms getting reported. But hopefully we will not have that problem, because Phoebe is doing amazing.
We also talked a little bit about joining the Parent Working Group. It is for PR-COIN, which stands for Pediatric Rheumatology Care and Outcomes Improvement Network. She said that Dr. L at the hospital knows more than she does, but currently Stanford does not have a representative, and she was suggesting me. So that is kind of cool.
I have already asked on Facebook and gotten connected with a mom who has a big role in the group. Participation has certain time requirements to be met: about 15 minutes a week spent on emails, and an hour long phone conference call once a month. There are also a couple weekend conferences in Cincinnati during the year, but those are more optional. It sounds like there are a lot of Projects and Committees, but I'm not sure what exactly those would be pursuing. The mom suggested that some people make a separate email account for handling PR-COIN business, so I am thinking of doing that. It seems like there is a lot involved (welcome email was filled with info and acronyms and ends with "if we haven't scared you away....") but I'm pretty interested.
The 2 hour infusion seemed to go fine.
We were finishing up in the 3 o'clock hour. Our nurse left to get the methotrexate and must have gotten caught up doing something else because she was gone another half hour or so. I started to show Phoebe part of the Lion King, intending to turn it off after "But I Just Can't Wait To Be King," but I must have dozed off in the middle of that song because next thing I knew there were scary hyenas chasing lion cubs around. So we switched to Moana for the last part of the day and got up through her meeting Maui. So that tells you how much time went by, I guess! lol
It was at last time to remove the IV. Apparently there is a national shortage of the spary they use to remove medical tape easily. This is one of Phoebe's least favorite parts. She does not like the spray and she really does not like having tape or bandaids taken off. So doing it without the spray was really sucky and she cried a lot. I was kind of stunned at there being a national shortage of this product. The nurse didn't know much, though she said sometimes there are planned shortages. I tried googling to see if there were any news stories about this just now, and nothing came up, but you can order it for like $15 on Amazon, so...... I dunno..... anyone wanna Amazon Prime me a bottle to bring along next time in case they're still out? ha ha.
Her nurse had a light up Chewbacca toy
Phoebe did not take a second nap, but with it being 4, I decided not to leave and hit rush hour. She was pretty tired, but we decided to follow Dr. B's suggestion and walked over to the new hospital, just down the street.
When we came there in February, parts of it were still under construction. Phoebe was so little and in so much pain back then, she had no appreciation of things like the whimsical decor of ocean animals and native CA beasts. Now she had to stop and hug or pet every animal statue we encountered!
Phoebe thought the sand pipers were hummingbirds.
We went to the playground outside. It was very beautiful, incorporating mosaic work into all the structures. Phoebe was just the right age of it, the slide was so small. We had so much fun, but I wasn't like, amazed by it. Dr. B had mentioned a garden, and warned us about bees, but to me, it wasn't very expansive, just some nice landscaping.
Instead of scoping out a restaurant for dinner, we just went to the Harvest Cafe.
Phoebe picked the banana herself and carried it to the cashier
It was there that I realized that there was a whole other play area outside the cafe. I'd seen part of it being built before. Now it was finished. Here was the garden Dr B was talking about. We were not troubled by bees; instead a dozen hummingbirds were fueling up for the night and dive bombing each other over our heads!
Ok, here are a ton of pics to enjoy!
Cordelia would lose her mind over this mountain lion cave.
This tree fort is amazing. I need it!
We left around 6:30 and made it home around 8:20. Some traffic, but no sitting at a full stop for ages and ages like we experienced before.
The song of the drive was "Let Go" by Frou Frou. I like the lyrics that say to stop waiting, just jump in and Life will be amazing. So often I hold myself back, or don't say what I'm thinking, but I'm trying to be better about it, even compared to just pre-parenthood Rachel of five years ago. I have a lot to stand up for now. Someone else I know was talking about finding enjoyment in imperfections and I feel like the phrase "there's beauty in the breakdown" really describes that. My life is not perfect, and sometimes it feels very chaotic, but even on hard days like infusion days, there turned out to be a lot to enjoy. I love my family and I love this incredible gift Phoebe has given me of making me a stronger mama, watching her fight and seeing how passionately she loves the world.
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